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An Introduction to Caregiving

The basic roles and responsibilities of caring for a stroke survivor

For the family members or loved ones of a stroke survivor, the news of becoming a caregiver can often come out of the blue. In addition to the emotional whirlwind associated with the days after stroke, finding all the tools and resources to become an able caregiver can be overwhelming. Stay strong knowing that there are networks of support and resources ready to help you provide responsible care and facilitate rehabilitation.

Who are Caregivers?

Most commonly, caregivers are family members providing for a loved one, typically a parent. They  take on the responsibility of ensuring their family member is safe and receiving the proper medical care. According to the American Journal of Nursing this situation is present in more than 22 million households and, according to the Family Care Alliance, most people become caregivers at some point in their lives.

What is Caregiving?

Caregiving is an unconditional promise to care for someone who is no longer able to handle the tasks of everyday life. It can be a temporary or long term commitment. Remember, it is a change for you, but it is also a life-changing event for your loved one. Sometimes focusing on being the best companion can be the most effective rehabilitative medicine.

The First Five Considerations:

Before you put on your caregiver-cap there are a number of considerations. Before bringing a stroke survivor home from the hospital make sure that yourself and your environment are prepared for the responsibility.

1. Prepare the home: Set up a safe environment with the case manager or physical therapist. Learn what adaptations facilitate rehabilitation and independence.

  • Build A Better Bathroom: Install safety bars at the shower entrance, on the shower wall, and on either side of the toilet. Grab bars will help reduce the likelihood of a fall, especially in an area like the bathroom where the floor might be wet.
  • Take Down the Temp: Lower the water heater temperature to avoid burns. You can also install spouts on showerheads that automatically shut off the water flow if it is too hot.
  • Clear the Pathways: Remove all scatter rugs, electrical cords, and all items that block a clear path. Make surfaces as traversable as possible for walkers and canes.
  • Provide the Right Light: Check that household lighting is adequate, to decrease the risk of falls and other accidents.
  • Takeout the Trash: Dispose of old medicines and hazardous household products.

2. Question Your Case Manager: Ask all the necessary questions and keep a journal of notes while talking with doctors. Understand prescribed medication and the potential for adverse reactions, and familiarize yourself with medical equipment and suppliers.

  • Knowledge is Power: Research your loved one’s condition to better understand the problems. If you educate yourself you will be more apt to notice changes in behavior that may require medical attention.
  • Be Respectful: Never talk about your loved one as if he/she is not in the room. It’s disrespectful and can make the loved one feel disassociated and not part of their care plan.

3. Master the Medicine: Create a checklist for daily medications and have it confirmed by a medical professional, and organize doctor appointments, tests, nursing visits and physical therapy appointments into a calendar.

  • Create a Medicine Chart: Put together a health information sheet that you and your loved one keep on you at all times. Be sure to have one available in the home in case of an emergency as well.  This sheet should include: the patients name, date of birth, medical insurer and medical condition. A list of all current and past medications. A list of medical procedures performed and the medical facility. Names and telephone numbers of family members. The healthcare proxy, living will, and Power of Attorney forms. Note: Once you give a copy of these documents to your hospital, it is no longer necessary to keep them with you at all times, however, if you should go to a different hospital they will require these documents.

4. Be Prepared to dial 911: Have a medications list, contact information for pertinent doctors, and medical cards on standby if an emergency should occur.

5. For the Caregiver: Caregiving is stressful both emotionally and physically, don’t forget to consider your own needs in addition to those of your loved one.

  • Take a Break: Plan alone time into your routine. This is a prime opportunity for friends and family to help. You should also plan activities that get both you and your loved one out of the house.
  • Find Support: Join or start a support group for stroke survivors and caregivers. You can work on solving problems together and proving mutual relief. Enjoy new experiences and avoid comparing life as it is now to how it was before the stroke.

By: Carol M. Maloney, Stroke survivor, former teacher, and adolescent literacy specialist.

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"Stay strong knowing that there are networks of support and resources ready to help you provide responsible care and facilitate rehabilitation."

Caregivers 101

  • Caregiving is an unconditional promise to care for someone who is no longer able to handle the tasks of everyday life.
  • Caregivers are commonly family members providing for a loved one, typically a parent.
  • There are more than 22 million households that provide care for family members.
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